I'm feeling incredibly low, I really shouldn't be. The endo I saw on sat was amazing and is sending me off for more tests on my adrenals, pituitary gland and root causes (EBV, Lyme, adrenal antibodies) I know how lucky I am to get this on the NHS after reading all of your stories but I'm finding it impossible to maintain a positive mental attitude.

I work as a teacher and everyone is starting back after the Easter holidays, I was really hoping I might be well enough to join them. I've had to stop the NAX, Erfa and most of my supplements for 2 weeks that helped me have a better week last week (better but nowhere near normal and functioning)

I'm only on day five and I feel terrible, back in bed all day again. Stumbling around like a drunk if I try to get up and do anything.

I feel scared I'll not be able to sort this and I'll be stuck in this state for life.

I've also been stunned that 2 of my closest friends just haven't been interested in visiting. I'm not able to drive and see them, stuck in the house all day and they've just dropped me! This situation makes you see how much people really care. Luckily I have many others around me who have been amazing and I'm very thankful for that.

This thyroid, endocrine stuff is horrible and those of you who have struggled with being hypo for years without proper treatment amaze me with your bravery. I had cancer 11yrs ago and quite honestly I found that easier to deal with than this!

7 Replies

Hi Spangly, just sending you an encouraging hug. I find the 'emotional' symptoms hardest to deal with (I have suspected Hashis, as yet undiagnosed/treated, except by my own supplementing Selenium/Biotin) if your mood is low it's hard to 'encourage' yourself to keep going 😔. I have been 'housebound' for years due to neurological condition, and stopped inviting friends round long time ago as the invites always 'get lost in their busy lives', family are often as bad, sadly. I use to be the 'visitor' and I suspect people have your 'role' engrained on their brain, it doesn't necessarily mean they don't care, but I know that doesn't make you feel any better, But the friends on here can and do offer wonderful support, empathy and good information, let Them help you feel supported while you wait for your blood tests. x Tricia

I'm sorry you are feeling so low. It's not nice to be dropped by people you considered friends when you're going through so much. Hopefully it is just because they are going through things themselves but if not, just concentrate on the ones who are there for you.

Teaching is hard work! Many people don't realise that the actual teaching is only a small part of the job. Are you able to do a phased return to work so you are not isolated but also not under quite so much stress?

I was unable to work, or do much else for that matter, for several years and I didn't think things would ever get better but they did... eventually. Now I lead a pretty full life. I'm not in perfect health but good enough that I can work. I'm even going back to university in September. A few years ago I would never have dreamt of this!

I hope all your tests reveal something that can be treated so you can start to feel well again. Look after yourself, don't expect too much of yourself and remember we are here if you need to vent.

I'm sorry you're feeling so grim. As you're off the meds it's perhaps not so surprising. I sometimes have low spots when I wonder if anything will ever change for the better. Adjustment to ill-health is so hard, and often the attitude of people you thought were good and reliable can leave you feeling very sad. Most people do not deal well with the ill and disabled of society, even if they are your family or friends, and such attitudes have only been encouraged by recent public policy.

As soon as your tests are done you can start building up the meds again. Whatever the results, you will then, I hope, know what you can do to improve your health. As for friends, you'll always find support here. All the best to you.

Thank you all of you! I'm currently not able to do a phased return as I'm not physically able, but looking to when I get well enough. At the moment I feel very ill (adrenal crash) after just walking for 10 minutes. Can't drive or prepare food very often for myself. But based on last week I know I'll get better once I can start taking the tablets again. Last week I made dinner twice last week and breakfast once, managed to get dressed and showered most days!

Hi, I'm so sorry to hear you're going through such a challenging time. I can totally empathise. I too have been through a mega time this year and it is horrendous. I know exactly what it's like to experience feeling so utterly shite with this illness. I think the problem with friends and family is they truly can't relate to how dreadful you feel - how could they? they don't have the illness. The other day I expressed to my sister and female friends the worst feeling I've had of hypothyroidism is like having proper flu with period pain all over my body at the same time. That seemed to jar them a bit more into understanding how bad you can feel. Then trying to explain the depths of the depression that goes with it can be very hard to relate for those who haven't been there.

I think generally the problem is hypothyroidism is reported to be feeling 'tired all the time' (TATT) but it is SO much more than that. I put together an information sheet to give to my family explaining the function of the thyroid, how it affects the 'whole' body, the symptoms it presents and why some people get on with some medications whilst others don't. Because I was fed up of repeating myself when I was asked the same questions over and over by people who don't listen to the answers I give and the surprise that family members didn't research the illness, knowing they have a close family member with this illness. I guess in their 'busy' lives it's not so important to them.

I get what you say about cancer. Sometimes I've wished I had cancer rather than hypothyroidism, because people seem to understand cancer more. You get the support you need from the medics, family and friends. Whilst with hypothyroidism, it's more of a silent illness it seems. Also I guess because some people have more symptoms than others, it's not the same for everyone. So I've found family members getting frustrated with me because they know other people with hypothyroidism who hold down full time jobs, get on well with their Levo, so in their eyes - why aren't I the same? Why do I 'claim' I'm so much worse than these other people they know and still haven't found the right combo of meds to get me completely well? Why can't I take Levo, whilst the people they know can? I'm sure they think I'm partly attention seeking! Which is absolute rubbish.

Can I ask why you have to stay off your meds and supplements for so long? Surely your endo will know you're going to feel a hell of a lot worse by doing this. Is it necessary really?

Re your work: Have you thought of supply teaching instead? I have a friend who's a teacher & had CFS/ME (now recovered) and chose to supply teach, so she could choose exactly when she wanted to work. She found this worked better for her energy.

What about adapting your teaching to offering after school private tutoring? So you only have a chosen number of pupils to teach at times that suit you. Perhaps this could be even done via Skype, if that makes it easier for you? I'm looking to integrate Skype into my work, to make it easier for my energy than working with people in person.

Remember how you feel at the moment will pass. Remember that you have felt better than you do now and you now know what helps you feel a bit better and that you can implement that again. Do you think you may have an issue with converting T4? I've found out that I do and that's why Levo didn't agree with me and I'm not getting full benefit from NDT either. I get a back up of T4 which causes me unwanted side-effects unless I'm on a small dose that doesn't give me the required benefit energy-wise. I think my body has difficulty with converting T4 to T3. I'm about to trial some additional T3 with a lower dose of NDT. I'd like to have the D102 gene test to confirm this but the cost is a bit prohibitive for me presently. Will your endo offer you this test? As he seems helpful with offering other variable tests for you?

Never feel alone. You are not alone. I know this illness can really make you feel like that-very much so at times. Know that here on this forum you have many supportive friendly people who can relate to you. It's such a resource, I know I've found that. I think friends and family don't know what to do to help either (mine have told me this), whilst here, people do, because most have experienced what we're all going through.

Thank you HEA72 for such a warm and detailed reply. Some great ideas on the job front, I won't be in a position financially to do supply and having done it previously I've found it very hard to find work (I teach a minor subject at secondary level, it also means people aren't interested in private tutoring for this subject) I am thinking when I get to go back to work I'll look at becoming more part time (officially I am 83% timetable but with teaching being teaching I was doing 50-60hrs a week of very physically demanding work) and then in the future when I'm well I could run workshops from home. That way if I do have a relapse it won't impact my school.

I do have a problem converting, I have done the DI02 test some time ago (paid privately), results Are being sent to my GP so I'm keen to see those.

I'm sorry to hear about some family members and friends not being understanding, it does seem to be the case with this illness. The information sheet is a really good idea. I've been quite lucky in that my family and partner are incredibly supportive. I guess they've seen me at my worst and understand that I do what I can.

I think NDT with T3 is where I will end up going after these tests. I know my Endo is thinking about T3 treatment after the tests. Although he's also considering cortisol dependent on the results which I'm reticent about. Particularly as I've found I've probably got a candida problem after doing the home spit test and steroids can make this worse.

I can't take any of the Nutri Adrenal Extra, Erfa or many of the supplements I was taking as I need to be off these for 2 weeks prior to all these tests he's doing to check the adrenal function and if it's a pituitary problem otherwise it skews the results. I'm so relieved to find someone who's keen to get to the bottom of the problem I'd rather have true results so it can be sorted properly if that makes sense.

This forum is fantastic, such supportive kind people with lots of useful knowledge to impart. Just reading other people's stories and concerns helps so much as you realise you are not mad for having these peculiar symptoms. I went to a face to face support group last week which was great. It was a mission to get there and wiped me out for a few days but it's been so useful and comforting to hear people talk about the issues they are having with medication and trying to get up the stairs when they are not feeling well.

I hope the NDT and T3 in combination work for you, fingers crossed. I have spoken to others who have had success with this. Keep me updated on your progress.